Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Thank you John. I don’t have gout but like the rest of us do have the PMR, going on 1.5 years. An understanding the pathways and efficacy of this drug fir the PMR is what I seek. Does it root out the underlying inflammation triggers? If so how, and when stopped donPMR symptoms return? I’ll ask my Rheumatologist next time we speak. She has mentioned using a biologic to help me get off the P more swiftly. I can’t recall the name right now.

I am in remission after 4 or 5 attempts over 5 years to get off prednisone . I started a drug the needs to be compounded into 4.5 meg it's called LDN (Low dose naltrexone) it's a game changer for me. Doesn't work for everyone but my doctor and his wife who is a naturopath suggested it two years ago August and I have not had a flareup. I still don't know where the PMR came from all I know almost sent me to a nursing home i'm 68 years old and live in Hawaii.

Chris, thank you for this valuable information. So glad you found a “ cure”. I will check with my personal sources and my doc and perhaps look into this. How soon did you get results? Did you taper off P and take the LDN at the same time? At what level of P were you when you you started the LDN?
I was hit with PMR at age 67. I feel strongly that the shingrix vaccine is what triggered my response. I already had a thyroid syndrome ( autoimmune) which now is known to be risk factor for getting the shingrix vaccine, as their info now disclosed that PMR could be triggered. Huh, alittle late for me and countless others! Oh well here we all are. Thank you for your insights. Best to you. Aloha

Glad I could help I was on prednisone for nine months each time and when I got down to the last .5 mg I would have a flareup within a few months that is when my doctor r gave me a prescription for the LDN I started it with a low-dose and over two months got the LDN to 4.5 without any prednisone.

I get it compounded at a pharmacy on the mainland.

Like I said it doesn't work for everyone but it was a game changer for me.

Aloha & good luck

My itchy skin has developed skin tags, not really blisters. I think I found out that the ibuprofen I have been taking (2 capsules at night) is the cause of not just the itching, but pain, weight gain, raising of BP. I have been off ibuprofen for 3 days now. No itching, pain level is at a 1-2, BP is slowly dropping. So is it the PMR or was it the ibuprofen (I took for 3 years). Not sure but will keep you posted. Thank you for the tip on the cream! I appreciate it.

I was diagnosed with Polymyalgia Rheumatica in April of 2021. I’ve just tapered down to 5 mgs. Of prednisone. What’s next?

Welcome, Floridabonnie. You may have noticed that I moved your message to this discussion with introductions of members of the PMR group. I did this so you can connect with other members like @johnbishop @legendts @mcgeesdad @karinaph @kimmgb @gcap and many others.

Bonnie, you mention tapering off prednisone. I think you might also be interested in these discussions:
- Tapering off of Prednisone https://connect.mayoclinic.org/discussion/prednisone/
- How to address PMR pain while decreasing prednisone https://connect.mayoclinic.org/discussion/poly-myalgia-rheumatica/

There are several other discussions about different aspects of tapering off prednisone, so be sure to browse all the topics of the group: https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/

How are you feeling on 5 mgs? What is your next goal?

Hi, thank you! I don't even know what my next step is. I don't see my Rhumatologist until July 9th. He said he wants me on as low a dose as possible, I have no idea what that is, so I am slowly cutting back, One half pill every few weeks. I am now down to 1 (5mg.) pill a day from 3 (5mg.) a day.

Good luck with your tapering. You are doing it much quicker than I am as I was diagnosed in January 21 and am on 8mg at the moment. My tapering is 1mg every five weeks and using the Mayo suggested schedule. If what you are doing is working for you then that’s great. Take care.

Hello @floridabonnie, I would like to add my welcome to Connect along with @colleenyoung, @legendts and others. The goal of tapering in the words of my rheumatologist (as I remember 🙂), is to taper off as soon as you are able to do it with little or no pain symptoms from your PMR. The rheumatologist normally will recommend a tapering schedule but it can be different for each of us due to the pain. Mine recommended that I keep a daily log and record my dosage and my pain on a scale of 1 to 10. I started with a monthly taper but within a few months I changed to every 2 weeks, then at the lower doses tried to taper weekly but sometimes had to go back up to the previous dose. I think the key is to listen to your body. For me if my pain scale was 1 or 2 I would taper to the next lower dose. If my pain went up on the scale, I stayed the course for a couple of days to see if it would get better. If it didn't get better I went back to the previous dose.

Another thing that will help is to have your doctor write a prescription for 1 mg and 2.5 mg tablets. They make it a lot easier to taper slower with a smaller drop in dosage. My first round with PMR took me 3-1/2 years to go from 20 mg to off of prednisone with the last 6 months going back and forth between 1 mg and 1/2 mg (split a 1 mg tablet) until I could finally stop taking the prednisone with little to no aches and pains.

You might want to write down all your questions to prepare for your appointment with the rheumatologist. There is a website with some tools to help you plan your conversation with your doctor. It has some cards you can print out to plan your conversation - https://patientrevolution.org/visit-tools